Was diagnosed with PMR a couple of years ago. Have had a couple of flare ups since. Went back on prenisone and things were better. This flare up Dr. put me on 20 mgs pred. Went back a few weeks later and my sed rate was down from 31 to 29 so he said I could start tapering the pred. Went to 18mg for a couple of weeks. Now I'm on 16mg. The way he has me tapering will take several weeks to get done. Well in the mix of all this I find I have a torn meniscus and will see an orthopedic guy next week. Is the pain in my hips, butt, thighs, knee and feet PMR or meniscus tear? I know you guys don't have answers but it's nice to have a place to go to vent! I'm beginning to think there is no such thing as pmr & the Drs. made up a name and are trying hit and miss methods. Except for you all I don't know another soul in this town with pmr. When I go back to the Dr. I'm going to ask if he has any other pmr patients and would he ask them to get in touch with me so we can cuss and discuss our issues. Thanks for listening and I wish you all well!
Hi Judy,
Firstly, even after a flare I think that your doctor is expecting to much when he asks you to drop 2mg a day after just 2 weeks. Secondly, I live in a small village in Hampshire which has around 300 residents of which 7 have PMR excluding myself, and an additional 5 people that I know within a 5 mile radius that suffer from it. It does exist and the sooner doctors take it more seriously and learn more about it we are flogging a dead horse. Stick with it and as always recommended reduce slowly. Good luck.
Do you communicate with the other PMR sufferers in your village? How unusual to have so many in a small village - it must be the 'air'!!😏 You would have enough members to start your own special group.
Hope you are progressing well.
Regards from Constance
I have had a meniscus tear. Basically your knee swells up and sometimes, as it was in my case, I could not straighten it out. It hurt in the knee, but not the other body parts. I had to have it surgically removed and have lived without it ever since. That was 36 years ago.
PMR hurt me in the places you describe, although my knees were not affected. I also had pain and stiffness in neck, shoulders (could not lift my arms), groin (could not stretch out my legs sideways). After 4 months undiagnosed, my wrists started to swell and hurt and my calves.
I finally found a good rheumy and was put on 20 mgs and when all the pain disappeared in a few days, the rheumy determined it was PMR. It took a number of weeks to drop to 15 and then to 12.5. Each time, I had to make sure I had no pain at all and my SED rate was OK.
The rheumy believes that if there is pain, then the inflammation and symptoms are not sufficiently under control. In such cases, she would recommend staying on the dose where my symptoms were under control.
Good luck!
Paula
Hi Constance. As it is a small village we often have social gatherings so we do meet up quite often and discuss our symptoms. There are 5 men, two are in remission and have been for the past couple of years, one has had PMR for 7 years now and got down to 3mg before a major flare late last year and is now stuck on 7mg a day, the other two are our local postman and a local farmer both of whom seem to manage PMR well enough to be able to carry on working. As they say on this forum, some doctors are reluctant to acknowledge PMR exists therefore figures can fluctuate from area to area, I assume doctors locally are more inclined to accept that PMR exists. Both females have had PMR for years and both are retired but like most of us have good days and bad days.
I don't seem to have the neck and shoulder issues like I did when I was first diagnosed. When I was first diagnosed with pmr it hit me all of a sudden. I couldn't get out of bed by myself. I'm 71 and used to be very active. Walking, golfing and arobics. Sure would like to get back to feeling better.
Hi Judy,
It seems interminable when you don't feel well enough to be your usual self. So frustrating! I sympathize.
PMR hit me suddenly right after the Baker's Cyst behind my knee ruptured. (I got the cyst rowing a boat for nearly 3 hours!)
Then, like you, could not get out of bed, off the toilet, get in and out of the tub, could not get dressed, could not cut anything, could not get in and out of car, etc, etc. I had just turned 67. That was in August 2013. Got diagnosed in December, started on 20 mg Prednisone. Now alternating 5.5 and 5 every other day. No pain, but feel fatigue. Need to sleep at least 8-9 hours a night to feel pretty good.
I do yoga every day at home (have done it for years) and the stretching really has helped me. I took Iyengar Yoga classes for a number of years and have figured out a routine that works for me. I think it is good to get blood flowing through the affected areas. I also walk, and use a stand up desk at work, although I do sit down periodically and stretch.
Had cataract surgery about 2 months ago and the rheumy had me double the Prednisone on the day of surgery and day after and then to 7.5 and back to 5.5. (10,10,7.5, 5.5) for each eye. She says any physical or emotional stress can aggravate the PMR. For example, was told not to reduce over the Christmas holidays.
Am wondering whether the meniscus tear is not aggravating your PMR and you might need to stay on the higher dose until the tear is fixed or removed, or whatever your orthopedist recommends.
Hang in there!
Paula
Before I was diagnosed last summer, I had a lot of pain in my groin, thigh, glutes & shoulders, & arm muscles. I was trying to go for a walk one morning while I was very stiff & was kind of shuffling along. Caught my toe on a root & tore the medial meniscus in my left knee. Swelled up to the size of a cantaloupe & had knee pain only--nothing else anywhere else that wasn't eventually be caused by my PMR. The pain you describe sounds more like PMR pain than from your meniscus.
Interesting. Since it is a small village, are you all somehow related, albeit distantly? Have the families been there for centuries?
I wish there was no such thing as PMR and its sister illness GCA, but there is and that is a fact. Vent away, but dropping more than 10% at a time and every week is asking for trouble. You will be very luck if you are one of the people whose PMR goes into remission within the stated two to three years. You won't do it by reducing quickly and then yo-yoing.
The ESR and CRP are just guidelines to tell you and the medics something is wrong and then work out what it is - the medical symptoms are important and the only thing that will control the inflammation is PRED. Your ESRand CRP will go up if you catch a cold, flu or any other virus or infection.
Go to the pinned section on this site http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Visit the North East and then email for two reduction plans, they are free.
Wondering why my post got removed. I did not add links, say anything inaproppriate or rude or controersial. Very strange.
Judy, I live in Belfast, Northern Ireland and don't know another soul that has PMR. I wish there was a group or something I could go to. Hope you get sorted out soon. Regards Pat
You are lucky Pat, I know two other people both with PMR and who live in Belfast. I have put into contact with each other.
If you want to take this opportunity, then go to the pinned section on this website http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Then follow the link to PMR&GCAuk North East Support, send an email with all your details including telephone number. I will then contact you as we operate under the Data Protection Act and just cannot pass on details without express permission.
Mark the email for the attention of lodger and mention Patient.co.uk.
Alternatively send me a PM.